Hello All,

We have added a new Link at Linkable.org to the Google Video RSS Feeds with the keyword "Disability".   The Link is on the top menu next to the Games Link.  Linkable.org is not responsible for the content of the Videos. 

Sincerely,

Jeff Redding 

 

Fibroterms in my support group gives us the giggles. To get us past some tough times, we are developing our own unique vocabulary... Maybe, just maybe, you will get a grin or giggle:

FIBROLOVE What we share with one another; a tender feeling for others that doesnt hurt

FIBROMYTE People who suffer with Fibromyalgia

FIBROFOG When the brain isn't engaged, but the heart is there!

Fibrotastic A good day, vs the horrible terrible Alexander kinds!

Fibrouged Fatigued to the maxed!

Fibrolous When someone in group uplifts you, it makes you feel "fibrolous"

Fibrolicious What someone is that makes you feel fibrolous... you are fibrolicious!

Fibromoto: When your stiffness is so bad and you get up ti walk a bit hunched over like Quasimoto (hunchback of Notre Dame)

FOL (fibrolaughing out loud)

??? hunched over granny sneezing her fanny off... so what would we call that? Fibrofannyno? Fibrosneezo? Fibromotouhoh? Fibrouhoh?

Fibroboogie woogie What we do when we find something that WORKS!!!

Fibrohugs What we want more of, just gently!

Fibrosnickers What we do when the doctor says, "It's a matter of exercise and positive thinking!" before we

Fibroslappo Batman-KaPow! Slam! Chunk! with a fist, a purse or any other object that might help them think again!

Other thoughts we've shared:

• "My head is like a bad neighborhood and I shouldn't go in there alone."
• "I'm not going to give anybody free rent in my head."
• "Being sick does not give me the excuse to act in a sick fashion."
• "There's no speeding in the trudging zone."

Fibromyalgia Winds of Change
Being Blown to and Fro, Where Do Our Lives Go?
By Shelley Echtle

Winds blowing remind me to bend a little, to hold my roots of values firm and my faith stronger. The winds of change I have endured as a fibromyalgia sufferer though, did not prepare me for the starting over that chronic illnesses forcefully demand. Like tornado forces, my clinging to superficials of today's world will only allow me to be swept up in painful retributions of spasms and headaches and so many other taunting struggles. And hurting is the last thing I want to induce.

I have learned that to accept and embrace my disease, rather than battling it constantly-- fighting the good fight as some doctors say, which only leads to further fatigue and depression; That embracing my curse helps me love the place it has brought me. Like loving the fact, I can not run 90 to nothing to shop for the bargains, or to double my school load each semester. Rather, I can shorten my days, and my schedule, and fall comfortably into my big fluffy pillow of rest and listen to music with more intent to relax my wearied carcass! By loving this place, I enjoy shopping now more for eclectic pieces of music to soothe my soul; I shop for devices meant to give me a helping hand, than demanding more energy, which is a higher price commodity in my world, than gasoline! I can choose what I need versus what society says I need. What I actually need is a lot less of many things, and more less-ness is what I really need.

Learning to love myself in the grip of this diseased storm, my roots cling to the faith I was raised upon, and proves it's truths to those around me. When others inquire "why" I keep singing and praying and smiling, in spite of the whinces of painful jabs and twists of pain, I can share my hope and faith. I love my shorter hair which allows me the time to carefully choose my clothing for the day. I don't have to spend hours in front of the mirror worried of other's scrutinizing stares. I love me, where I am, deeper roots than formerly pronounced. Maybe, my God, brought me to this place to learn how to smell the roses, count my blessings, and catch my breath. Maybe, this place isn't really a constellation of diseases and syndromes and drugs and doctor visits, but rather a milky way of rest, of personal reflections and choices for future goals that I might not have recognized otherwise. If so, then this billowing breeze turned hurricane has swept me to the yellow brick road and rainbow and beyond to a happier life by choice.

I can use this disease... just like it has used my body. I can reach out to others. I can choose to guard my time with family. I can do in a smaller way with more meaning, more love, more spirit. I can write and sing and show hope to others who might not see it elsewhere. Sometimes, the kindest words one hears, are the ones they speak themselves. I can be the kindness missing in this world. I can be the voice of the mute, the dance of the handicapped. I can be. I can lift my head to the winds and sing.

Hello All,

We have added many Health and Disability Related News Feeds to Linkable.org. Now you can stay current on a wide range of subjects. Our News Feeds update every hour.

I hope all visitors find this to be a useful resource.

Sincerely,

Jeff Redding

Our membership is free, all you need to do is click on the Register Link in the Login area.   Anyone can join, you don't have to be disabled.

 I would be happy to answer any questions.  

Sincerely,

 Jeff Redding

 

I know that you don't see me, cause I am disappearing.

The bright professional with clients calling.

The mother who walked each evening after math tutoring and bubble bath dips.

The poet whose words flowed so easily with pen and paper.

I know you don't see me...

The challenger in scrabble who always used her letters.

The weight lifter whose sons wanted to be "just like me".

The chef, a barbecue king whose life was envied by the neighborly drifts of pungent sauces and laughter rolling over the fence.

The dog doesn't get walked. The car is always sitting in the driveway. The laughter has subdued to open windows of tv chatter and silence otherwise. The gardens have died. The professional has retired. The walks have ended at the curb.

You don't see me, cause I am disappearing. 4/2008

Shelley Echtle-- NTXFMS@aol.com

This is the sentiments shared with me by an anonymous person in  my Fibromyalgia support  group + my friend Karen. We hate admitting this!

Karen passed away, Nov. 2006 from Lupus symptoms. Karen was my cheerleader. She suffered for the 27 years I knew her. First with pain, then with weight gain from steroids as doctors argued about her many escalating symptoms. As a state basketball champion and record-setter (that has yet to be broken), she spoke often, how people that got to know her in the past 15-20 years, didn't see or know "her", cause "she was disappearing." Nobody knew she was athletic, had taught PE for many years, and was a stand up comedian. Nobody knew, cause they saw a "fat woman on a scooter" popping pills or headed to a hospital as frequently as she did. Her own grandchildren didn't recognize a photo of "her" from only 5 years before they were born! It always saddened me to hear her speak that, but her confession was what many of us go through- we just don't speak it- a metamorphosis so to speak as our bodies decline, and yet, we remain this "other person within" with our cherished memories.

In the last 3-4 years, I see myself disappearing. Tonight, it was sparked merely by a lawn mower commercial-- silly huh? But I was the 10 year old girl so proud, because I was the boy my dad never had. I was the lawn keeper. The fisher-girl; the frog catcher; the bee keeper with a smoky hat and net over my face. I was then the only one in the family to go to school, earn a degree, survive the horrible hardships my dad grieved me being tormented with.

The commercial reminded me that my late husband didn't have to do all the yard work, ‘cause I enjoyed gardening, trimming, even raking and pulling weeds. When he died, I re-did the flower beds, tore out trees, and won "Garden of the Month" in our tight secure neighborhood... Today, I was called out side, as Danny (new husband) showed me the new herbs he bought "me" that I could grow on the patio table... What? I can't do more than pluck leaves anymore. Karen was right... I am disappearing. Stupid commercial!

But though I grieve me...  we are grieving ourselves... I am still trying to be vibrant... hopeful... realistic... and learning to deal with my disabilities so I can have a better life. I am trying... but that stupid commercial set me off and I wonder, will my new grandbaby, Avelyn, ever know the grandma that is in the recesses of my mind, or will I just be the fat grandma on the scooter?!

And life goes on...

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Sincerely,

Jeff Redding 

 

 

I am applying for a 501c3 non-profit status and I need some volunteers.

Board Members will meet in a Virtual Classroom to vote on Linkable.org associated items.  If you have experience in non-profits or the disability online community, and want to help, please contact Jeff Redding.

I am also looking for volunteers who are willing to "hang out" in our Virtual Classroom as room moderators.  This is a great way to get used to teaching in a virtual environment.

Thank you.  Sincerely,  Jeff Redding

 

 

 

 

 

 

 

Hello All,

This Blog is provided for our members to introduce themselves. Announce upcoming events, or share general news about yourself, organization or company.

Members may write on this blog by clicking on the "Write a Blog Entry" in your User Menu. 

For interactive discussions please use our forum or virtual classrooms. Thank you.

Sincerely,

Jeff Redding